Friday, February 27, 2009

Cancer: Lemons to Lemonade

Cancer is the diagnosis no one wants to hear. For some, treatment is getting better and survival rates are rising; for others it can be a death sentence. Still others find themselves in a sort of limbo, receiving chemotherapy, not getting much better, not getting worse. For much of the time, between chemo treatments, it's poor sleep, nausea, joint pains, general malaise, extreme fatigue and worse. The rest of the time the severity of the symptoms can lessen but they're never really gone.

Do they have to continue this way forever? What if they stop the chemo? Can they reduce the frequency? Can they reduce the dose? What are their options? Not unreasonable questions, are they?

Patients would welcome some guidance, some help in making a choice. If they ask their doctor, "What do the statistics show?" The answer will most often be, "We don't know"!

I have contacted the American Cancer Society, the National Cancer Institute, The FDA, and the Department of Health and Human Services trying to get these answers. Essentially they all said the same thing, they don't use historical hospital data. Eli Lilly, the maker of one recent cancer drug, Alimta, said the same thing adding only that the "standard dose is to be delivered every 21 days". When asked if they follow up hospital records to assess benefits or effectiveness of long term use they replied, "We don't have that data". After 6 months can the dose be safely reduced? "We don't have that data".

Surely patients have already made such choices in the past. Where is the information about those choices?

The sad truth is that the data is there, in every hospital, in patient records. It simply is not coordinated and analyzed. I asked an oncologist at the Dana Farber Cancer Center, one of the worlds finest cancer hospitals, if they pull their past data together to help answer these questions; "We don't have such studies." Individual doctors of course can review their own cases and try to draw conclusions but doctors are very busy treating patients and don't have the time or expertise to consolidate this data in a way that is scientifically useful. How ironic.

Pharmaceutical companies spend millions doing prospective studies on the safety and effectiveness of new drugs but once the drugs are brought to market there apparently is no effort to evaluate effectiveness after prolonged use. There should be follow-up. These questions deserve answers.

What if certain cancer drugs become less effective over time? These are not innocuous chemicals. They are toxic, they kill good cells along with the bad cancer cells, they make patients feel awful, and they cost a fortune. And when asked if their effectiveness diminishes over time we're told, "We don't know".

The federal government has announced a push to standardize and computerize patient hospital records to reduce errors and cut costs. This is a good thing.

And we should build on this and make it possible for investigators to access this data to analyze continued effectiveness of various treatments for cancer as well as other diseases. If the records were designed with a standardized format to include all data necessary for a scientifically valid retrospective analysis it would provide an enormous amount of information for doctors and patients. We have an extraordinary opportunity here in Rhode Island to do this. The data is there, waiting, in our hospitals and across the country.

What if we found that some long term treatments can be significantly reduced without danger? Think of the savings, think of the benefits to patients. It be wonderful for the Rhode Island Department of Health to embark on such a mission - to standardize and digitize all patient records while respecting patient privacy.

Rhode Island currently does keep track of cancer and related diseases (see Hospital Association of Rhode Island), but the reporting is not exhaustive and does not systematically track individual changes to treatment and their effect on outcomes.

This initiative will require creation of a team drawn from the Rhode Island medical community, including hospital and medical school staff, whose task it will be to standardize medical records, gather, analyze and publish the results in journals and on-line. This effort could serve as a model in which Rhode Island's medical community leads the way and helps our doctors provide even better medical care for our citizens.

Friday, February 13, 2009

Are We Doomed to Self(ish) Service?

You're either with us or against us is the philosophy that has gotten us where we are and it's a lousy place to be.

But the evidence abounds that this "either/or" mentality rules and when it comes to union issues it seems most visible.

When members of a private sector union are asked to sacrifice benefits for a company, they know that those sacrifices will benefit stock holders, executives, the company bottom line and their lenders - not necessarily bad things, but not something that will appeal to a worker's altruism and better nature.

When a municipal union member is asked to sacrifice benefits, is it because the stockholders want more profits, the executives need more compensation than their already obscene pay, or the city isn't wealthy enough?

Of course not. It's because the city, with the available revenue, is having trouble providing the services expected by everyone. If it's not possible to reduce costs then reduced services will surely follow.

If we don't see a difference, then our unions are in danger of becoming no better than their original foes - the selfish business owners who didn't want to give an inch to their employees. Only now it's the unions who won't give an inch to their employers, the property tax payers. We have to do better.

Saturday, February 7, 2009

Will We Ever Not Be Stupid?

Read the blogs, read the papers, listen to talk radio, watch TV. It's the same everywhere.

The [you choose: right, left, Republican, Democrats, unions, businesses, liberals, conservatives] are un-American and think only of themselves. They are clueless and if you listen to them they will destroy this country we all love (except them, of course)

Can it be that we're really so dumb as to believe that only one side has exclusive access to the right answers and all the others are wrong?

Will we ever be able to stop and actually listen to each other. When (if) we finally do, we will benefit from the combined wisdom of our people and be the America we once were.

Maybe President Obama will let it happen. We can hope.

Wednesday, February 4, 2009

Dick Cheney's Comments

Dick Cheney was quoted in an interview with on his views on terrorism and the Obama administration;

"The choice, he alleged, reflects a naive mindset among the new team in Washington: “The United States needs to be not so much loved as it needs to be respected.”

Mr. Cheney is at least partly right but I don't believe he's using the words he really means. I think he has conflated respect with fear and really means we must be feared if we are to be safe from a terrorist attack. Fear results from displaying power and military strength, being ruthless and flexing muscle.

Mr. Cheney, respect has to be earned by our deeds and principles. When we have once again regained the respect that we once had we will indeed be safer than we are now. On the other hand, fear spawns mistrust and even hatred which is exactly what the last eight years have given us.

So, Mr. Cheney, you are right. We need to be respected. If only you understood the difference between respect and fear.

When is investing not investing?

Most everyone is affected by the recent financial meltdown in the stock market and the economy in general. Millions have seen their investments in their retirement plans lose a huge part of their value and they are justifiably worried.

Since you have no influence on stock prices once you purchase them, are they really investments or should it more accurately be called gambling?

Some definitions of gambling include:

1) anything involving risk or uncertainty

2) take a risk in the hope of a favorable outcome

This sounds much more like what we do when we "invest" in the stock market. In fact when we buy a house with the goal of making a profit when we sell it aren't we doing the same thing? Indeed, we are gambling.

On the other hand if one buys a house to live in while raising a family or to enjoy retirement, we are more like the business owner who invests in his business. We too, maintain value by keeping our home well cared for and updated. We even may increase its value and if and when we decide to sell the home it may even be at a profit. So much the better.

But if our home is worth a little more or even less when it comes time to sell, have we not enjoyed our 'investment' all the years we have owned it and lived in it? This is a true investment.

We need to rethink our notions of investments and gambling. When we buy stocks and lose money on them we need to understand that we have lost a gamble; we made a bet and lost. If the price goes up our bet has paid off. It's a gamble not an investment. Our so called investment is actually a crap shoot and the most we can expect is that the dice aren't loaded.

If our pension plans 'invest' in the market and lose value we can be disappointed but don't whine about it. We lost a bet. If you don't want risk, don't gamble.

It's an ugly truth that transparency, oversight and basic honesty have been in short supply, and those in charge on Wall Street and in Congress need to be taken behind the woodshed. Despicable, greedy, dishonest behavior needs to be stopped, and punished and soon.

But the bottom line is that our economy has been built on gambling, and as any good gambler knows, you have to "know when to hold 'em and know when to fold 'em".

And let's not be stupid - always keep some 'real' money in the bank for emergencies. (preferably a bank that isn't getting a bailout)

But maybe it's just me.